Fibromyalgia Novel Pain Treatments

[Farmgirl]

Steve, I appreciate the “amusingly” re your medical appointment. So sorry about the profound and unrelenting pain. It’s exhausting. Here’s one to not try: infrared sauna. I just did three half hour sessions, one every other day, and while it did seem to temporarily give some relief I am now so wiped out and fuzzy brained I’m not sure this will even make sense! Next up, a bio mat with infrared and PEMF and ‘healing gemstones’. Sigh. 45 days to try it and then can return. One friend swears by hers but it’s not clear what her thing is, ie fibro or CFS or something else.
Cbd oil did help with pain, I didn’t know how much until I stopped! Had to stop because, of course, I am one of the few people who got knocked down with canabinoid hyper-emesis reaction and I am not ever going to go through that again!
Okay, so, the flotation? How was that? How about cryotherapy, which sounds awful actually but who knows.
Please don’t give up!

Thanks! You just encouraged me to get back in the sauna!

 

[Steve]

My cheapie SereneLife (I love that name) plastic sauna arrived just now from Amazon, will try tomorrow.

Also retrying cbd oil at higher dosage, dk what dosage works for pple. I’m pretty sensitive to thc, I think, and the .3% in this oil in a 84 mg cbd full spectrum oil is pretty noticeable to me.

 

[Farmgirl]

My cheapie SereneLife (I love that name) plastic sauna arrived just now from Amazon, will try tomorrow.

Also retrying cbd oil at higher dosage, dk what dosage works for pple. I’m pretty sensitive to thc, I think, and the .3% in this oil in a 84 mg cbd full spectrum oil is pretty noticeable to me.

@Steve
Great about the sauna! If you are sensitive to other things, take your time adjusting to the sauna. It wiped me out a lot. Hope it helps!

 

[Steve]

I wanted to do a brief update to inform folks and keep this thread alive for supplements, drugs, devices, behaviors, and any other unique, barely examined ways of coping with nearly tap-out FM pain. I have used the sauna, a very cool device, well, hot device, for almost 2 weeks, about 15 or more minutes at 140F followed by wrapping in a warm towel for half an hour. No exhaustion or negative effects. This exactly replicates a very positive 2008 published study, never followed up, with 17 Japanese women with FM. Unfortunately, whether my length of time being multiples longer with FM than they, male vs. female, or other variables, I would say that I have sweated a lot for nothing, another disappointment. I also don’t note any particular benefits from sauna sweating though it has gotten easier to do. I also started taking two capsules 350 mg b.i.d. of PEA from Vitalitus about a week ago. Apparently this can take months to affect chronic pain so
I will continue, absolutely no benefit yet.

I’m getting another alkaloid with good reviews Saturday, incarvillea sinensis, that is supposed to be a good non-sedating analgesic, though at this point I don’t care if it’s sedating, I will just stay home and be happy with less pain. I also hope it doesn’t cause liver cancer like a lot of sketchy Chinese herbs. I suspect it’s a kratom cousin, maybe with different receptors and I will research a bunch before taking, not expensive. Other than maybe VR or coming up with more herbs, I’m out of ammo here unless I can get a PEMF device. This is the first time in six years when I can’t at least look forward to trying something else and it’s a very bad feeling. Let’s hope the Chinese herb works. Any other ideas greatly appreciated. GLTA

 

[madie]

You could try the Vital Motion Hummingbird device. It costs $400 and comes with a 30 day trial period which they apparently extend for people who are unable to start at full time/intensity.

It was developed for FM. I'm in a small FB group of people trying it for ME/CFS symptoms, and I've only just begun, so I can't give you useful personal experience. It's a machine you put your feet on, 1/2 hour 2x a day, and the very mild vibration stimulates circulation.

 

[Steve]

Thanks for your post. It would be helpful if you could post results of your experience when completed. I can’t get my head around that concept, to be honest. I’ve tried and returned a lot of gadgets;if you have great results it would make me more likely to try one I’m scientifically skeptical about.

 

[Ian Mills]

@Steve I'm sorry to hear about your pain. I have tried psychedelics similiar to mushrooms. I find it works amazing for pain in the moment (eg. when ingesting it) but no lasting relief beyond that really. It might help my headaches a bit. I notice that when I clench my teeth my headaches are worse. Psychedelics make me relax and not clench my teeth for a few days and less headaches I think, although this isn't exactly clearcut. Really my main reason I use is for mental health... that effect can last for a few days

Have you tried kratom? I find it works just as well as tramadol except less side effects. Once I switched from tramadol 3.5 years ago I haven't looked back.

I find compression socks help for feet and lower leg pain. I hope you can find some relief in this seemingly endless journey

 

[Steve]

Hi Ian,
I greatly appreciate your reply and read when posted but things have been so bad I haven’t had the personal resources to formulate a reply. I did think of a fibro joke...What’s the difference between FM pain and no FM pain...about fifty Ambien. You know things are not working when these jokes occur to you.

I haven’t tried mushrooms yet as my source would be distant and I still wonder about trying them when my mood is not good. Maybe the mushrooms would provide a positive boost? The body pain was almost unbearable yesterday, fortunately better today but I find constant severe body pain leaves me exhausted. I count the hours til my next tramadol dose even though it reduces pain maybe 5-10%. I did try kratom pretty exhaustively, six strains, did not relieve pain but made me literally a zombie sitting in a chair, almost drooling and unable to move for several hours. I started with a very small weighed dose of each and kept detailed effects. While some were not as zombie-producing, none affected pain more than 5%.

I am folding up my portable sauna after a useless 1 1/2 months trial. I don’t know why people like these even without having FM. I also got too nervous about trying more than a dropper of Incarvillea sinensis as I could find zero research assuring me of safety and don’t need liver cancer. Have not found compression stockings helpful but could tolerate for a long distance flight a few years ago.

Interesting (to me) is I just developed carpal tunnel in my left middle finger, very painful and refused to extend or bend without assistance and the other fingers and palm also painful. Oddly, I have pain but no real bad flexion problems in my right hand also. The PA tried to say I had typed a lot in my former occupation, stopped seven years ago, not so. While I initially thought it was my first physical problem not related to FM, the bilaterality of it got me suspicious. Checking, I find that carpal tunnel is considered a peripheral neuropathy. Duh! Is there no end to FM consequences? It makes me wonder if steroid injection or surgery , both with mixed reviews even for non FM folks, would help. I’m researching carpal T more but will now do my intermittent pub med central crawl for “ fibromyalgia novel treatments.”

The novel FM TB vaccine treatment trial by Bruce Gillis, M.D., authorized by FDA in October, 2018, has still not been scheduled, despite his assurance years ago to me when I took his cytokines blood test that he was all ready to go and cure people. His staff says he is waiting a while. That leaves unknown dozens or hundreds of pained FM folks, some who paid $1000 bucks to this weasel for a blood test and have been waiting since 2012, twisting in the wind.

And that's the way it is.

Steve

 

[Steve]

Thread still alive? I have obtained some shrooms and will try sitting on porch on first sunny warm day, will try anything at this point. Pain almost unbearable everywhere every day, local and body wide. I’m tempted to try a morphine tab left from a dying relative but even if it works I can’t get anymore until I get the same cancer my parents did, grim thought.

I just received my Micropulse M1 super duper pemf device, battery is charging for first time. Anyone try this...put on hypothalamus? local pain area? It has a variety of protocols but Bob the creator is extremely cautious about reco’ing for medical use as it is notFDA cleared for that, is for “experimental use only”, and I would appreciate any specific treatment info from anyone who has used and found helpful. Pricey gadget with trial and restocking fee $$ will go back if no use. TIA.

 

[kamodio]

Thread still alive? I have obtained some shrooms and will try sitting on porch on first sunny warm day, will try anything at this point. Pain almost unbearable everywhere every day, local and body wide. I’m tempted to try a morphine tab left from a dying relative but even if it works I can’t get anymore until I get the same cancer my parents did, grim thought.

I just received my Micropulse M1 super duper pemf device, battery is charging for first time. Anyone try this...put on hypothalamus? local pain area? It has a variety of protocols but Bob the creator is extremely cautious about reco’ing for medical use as it is notFDA cleared for that, is for “experimental use only”, and I would appreciate any specific treatment info from anyone who has used and found helpful. Pricey gadget with trial and restocking fee $$ will go back if no use. TIA.

Hi Steve. Somehow I lost this thread but I’ve been thinking about it and you. I kept my infrared mat with pemf and do find it helpful for pain particularly when I’m on it. I’m curious about mushrooms too, possibly micro dosing as I’m not so interested in tripping as I was in college! Apparently it legal to buy the spores (I don’t know where or how) and is supposed to be easy to grow your own. Have you tried them? I’m a bit concerned that the pain might be intensified, but I have had that experience with weed and it was paradoxically helpful in that I was able to go into the pain in a way that relieved it. So who knows. I hope you’re finding some relief. Oh, and I’ve see some posts on FB about a chi machine that some are liking. The search continues. Peace to you and your body.